Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

DD was admitted with similar 'numbers'. It was really scary. The first step will be to physically stabilise her. They will likely introduce a meal plan which will increase slowly and daily bloods to see if the body is coping (there is the risk of re-feeding syndrome but in hospital, this will be managed). If she doesn't eat, they will place an NG tube. We have been there. It's very very scary but you are in the right place. Usually doctors come around in the morning so you can ask questions then. did she have bloods and an ECG? These are standard tests in these sort of situation.

Thank you @Pearl97 and @Curlyhairedassasin

She had had a slice of toast but flatly refused a banana as a morning snack. Still no-one has seen her, so it’s very frustrating to have no plan. It feels like we have just been dumped on the ward and all obs go into some black hole.

still waiting for CAHMS and the docs, but both are due this AM …

im told we will be issue with a diet plan. I just don’t understand how that will make a difference, as she just won’t eat.

They will try to get her to eat and if that fails, she will be fed via NG tube. sometimes, they eat out of fear of the NG tube. She needs nutrition and they will feed her. It's just the question how. I found the when DD's brain was so starved, she couldn't make any rational decisions. Zero reason. Her brain engaged much more after a few weeks of NG feeding.

I guess you are on a normal peads ward? (that's where we were for all admission, DD never got a place at an ED unit). Are you just under CAMHS or do you have a dedicated eating disorder service locally? For us, olanzapine has helped a bit. It's an antipsychotic drug which is used in low doses for anorexia around the huge anxiety in relation to eating. Worth asking. I think part of the issue is the weekend. Has there been a ward round? If she is admitted due to all these physical red flags, it should be up to the ward to come up with a plan, it's not so much a CAMHS things. We had a specific paed doc assigned to us who oversaw DD's care. I would also be prepared to be in there for a few weeks.

I agree with it being the weekend.
We had an ED team who watched eating lunch etc. The doctors looked at her obs but were very much led by the eating disorder team when it came to discharge.
As @Curlyhairedassasin says I would prepare for a few weeks. We then had home intervention at home for 6 weeks. I didn’t want to hear about this, but I had to tell work school etc and organise help for siblings xx

Thinking of you @HappyRainbow123 We hope you got some support at the hospital yesterday xx

Hello @HappyRainbow123 so sorry you find yourself here.

my daughter is 13 and we’ve spent five weeks in hospital since the beginning of September, admitted for the same reasons as your daughter. Low heart rate, low blood pressure etc. We were first in for three weeks, she was given a set meal plan and if she didn’t eat it she had to have a supplement drink which would be given via NG tube if she wouldn’t drink it. I can’t give any advice on what the NG tube is like as we don’t get to that point but they simply wont allow her to not eat. We had daily bloods and ECGs and after five days her meal plan was increased. She was managing to eat it all ok, despite not being overly happy with the quality of hospital food, and managed to gain 1.5kg while we were in. We then had home leave and were discharged, but she then proceeded to lose the weight gained over the following two weeks and we were admitted again. Same routine followed. It was at this point that we decided to pursue a Tier 4 admission, as even my daughter admitted that she couldn’t manage this weight restoration phase at home, and following another two weeks in hospital she was admitted to a eating disorder unit and has been there almost two weeks now.
Eva Musby has some excellent resources including a book and videos on YouTube that will help give you advice on how to encourage her to eat, but the point blank refusal is certainly something we have been through here. Sending you lots of love, it’s a brutal thing to go through.

Thank you again for your comments and advice.

We are home! So, the registrar over the weekend had us eating 800 calories on Sat and 1000 on Sunday. Very much DIY, thanks to M and S downstairs. We were promised it would get easier when the dietician got involved.

Today everyone came in. Told her she could go home, as the were only administering multivitamin and doing obs, which were stable enough to be checked by the ED clinic tomorrow. They say her heart rate will take a while to come up, and she is better of resting at home. And she needs to have 3 meals and 3 snacks a day, which she is very distressed about.

Today she has done well. 1200 calories - three meals and one snack (I’m going to try to get another snack into her). But …

After both this afternoon’s snack and after dinner she started crying hysterically. She says eating makes her feel bad (maybe like
she has failed?). We talk constantly about how food is good. Food is medicine. The GP, the doctor, the 6 or 7 team members that visited the morning ALL agree she needs to eat more. I say she must have some naughty little gremlin trying to trick her into thinking food is bad. But I don’t know how to help! I’m really hoping to get help at tomorrow’s ED assessment with CAHMS. Weirdly, once she starts eating she can just crack on, but finds it incredibly difficult to start and then regrets it afterwards.

So sorry to hear what @HappyRainbow123 is going through

Does anyone know what happens with patients who don't attend? DC hasn't attended for well over a month, there's always a reason, and never rearranges/advises services themselves. Hospital do not respond to my concerns at all
What happens next? Am i just stuck alone trying to deal with this?

Hi @HappyRainbow123the distress after eating is v v normal, learning to manage their distress is an important skill (although very difficult.) She has trained her brain into wrongly believing food is dangerous so her brain will chuck every negative emotion at her when she eats thinking it’s helping iyswim?

It’s good she’s eating even though distressed, all you can do is remain calm, tell her how much you love her and that you’re sorry this is so difficult for her.

Distraction will help, use telly, games, crafts, iPads, anything to keep her mind off the food that she’s eating.

Wonderful news @HappyRainbow123! Is she low weight?

This condition turns all the parenting advice on its head. Junk food and screens at table are your friend. Used to distract Dd by watching reels while she ate. Just find stuff that works.

If you are a reader Caitlin Moran does a great chapter in her latest book on parenting an anorexic teen. Also the journalist Hadley freeman has written a book about her own experience as a teenage anorexic. I found both interesting / helpful and supporting.

Yep. And I’ve NEVER been a “clear your plate” parent nor wanted to be dictatorial about food. When I first read Eva Musby’s info, I felt it was so instinctively wrong. But as I have learned more, I can see that this is how I need to proceed.

I have just spent TWO HOURS getting her to eat 4 grapes. Thought it would be a nice simple snack, and as we had hit our calorie target* I thought I’d pick something easy. She was so distressed after eating them. Keeps saying how bad she feels. But I felt I couldn’t let the ED win the battle. But feel so bad that she’s really upset now.

*in the absence of any dietician advice so far, I’m roughly sticking to the hospitals advice of an additional 200 calories a day. Today the 1200 target was met.

Officially, according to the NHS website? She’s right at the bottom of “healthy”. But what with the rapid weight loss and low BP, HR and temp, it seems to be being considered urgent.

That’s good @HappyRainbow123 that it’s being considered urgent. I hope you get some help tomorrow. It’s a really difficult time xx

Thank you x

@HappyRainbow123 it can be a lonely time. We’re here to help.

@unbuckle how old is your child and are they very underweight? I know they do home visits etc but it will depend on many factors. You must feel very lonely and scared.

Best of luck at your assessment today @HappyRainbow123 and I hope you and your DD both get the help and support you need. It's a slow process so steady yourself. It sounds like you've caught it early though which is great.

We've found all of the staff at CAMHS ED to be very helpful and supportive so I hope you do too. We have our weekly appointment with CAMHS today. We're about 11 weeks in now and she's gaining weight slowly but steadily. It's hard, really really hard, but they can and will recover. Best of luck today

They are an adult, maybe 15% below lowest normal weight

Good morning all. We had our CAMHS assessment yesterday, and it went well. Nearly 2 hours with x2 psychiatrists, and we felt that we had been able to explain and discuss everything we could think of. One of them will call us tomorrow, we're getting a home visit and they'll review next week.

Unfortunately, no magic wand yet :( We've had a few meltdowns. Particularly relating to snacks - she thinks that she only needs meals. The good news is we reached 1600 calories yesterday, and should achieve the same today. But without snacks, we are just going to struggle to progress.

We had visitors from the CAMHS ED team visit us today at home. They will come next week at meal times - we will probably use them to help my husband with getting her to eat.

I'm trying to add cheese to everything, but she complains about this. Dinner last night went well - I put two tablespoons of cream into her spaghetti. And she wants salad tomorrow, which works: between the pine nuts, the roasted (in oil!) sweet potato and the salad dressing, I can make it a very calorific meal.

I’m so pleased you have help @HappyRainbow123

Having the team come to your home will be helpful. Is your daughter signed off school?
I really hope you feel supported now. It’s much better that you’re home and not in hospital.

Have the issues with eating recently started?

@HappyRainbow123glad you found the appointment helpful.

It won’t be your dd asking for a salad, it’s definitely the anorexia asking.

It’s important to learn what’s her talking and what’s the ED. Even though you can add calories to the salad id be cautious about allowing your dd to request any dinners at this point. My stock response to this type of request would be ‘at the moment sweetheart I will decide on what’s for dinner, I know exactly what you need’

My dd really struggled with snacks as well, in the end I tagged them onto meals so after lunch dd had a ‘pudding’ normally a piece of cake or chocolate and she had another ‘pudding’ after dinner these were fairly traditional old school puddings rice pudding/sponge pudding and custard etc.

Calling it something other than a snack seemed to help if that makes sense, the other thing you could try is smoothies or milkshakes instead of a snack. If you make them yourself you can pack loads into them.

I absolutely get what you're saying about not letting her choose what she eats. I plan things a day ahead and there's little wriggle room. But I'm trying to involve her a bit (it's just easier!). For example, she wanted sausages on the menu. I put them into a pasta dish with pesto, cheese, cream and broccoli. And with the salads - ages ago she marked in a recipe book all the salads she wanted to try. I chose 4 yesterday that were appropriate, and together we picked one. It has roasted sweet potato (I've done them soaked in loads of oil!) and pine nuts and salad dressing, so the calorie count is quite a bit higher than yesterdays cheese toastie.

I've managed puddings after the last two dinners, but she had friends over as well and the peer pressure helped. I'm not sure how I'll manage tonight's.

Yesterday we reached 1750 calories. Our target is 2000, but that number just feels unachievable at the moment.

I hope so - they'll come a couple of times next week. We have decided to "use" them to help my husband with meals - she is much "worse" with him.

I guess she's signed off school - we have told them she won't be back this week. I don't think she'll be back next week either. We have been told she can't do much activity at all. No-one has really mentioned it. At the moment I'm with her nearly 24/7, but I do need to get back to work. She can come with me and sit in an adjacent office, and my husband WFH, so she will be physically safe. It's just that I won't be able to sit with her, forcing her to eat a snack, for several hours. But that's not sustainable anyway :(

@HappyRainbow123whst is she having for breakfast at the moment? Can you add more calories to that? My dd had porridge made with double cream which worked out about 700 calories.

Pretty much everything she ate had double cream, butter or oil added to it and eventually we were up to 3000 calories a day which was when the weight started to go on regularly.

Food like mashed potatoes, scrambled eggs, soups, pasta sauces, curries, toasties all can have a lot of extras added to them. Smoothies and milkshakes are also good calorie hits, I made my dd a strawberry smoothie that was basically strawberry’s and cream and would have been easily 800 calories.